Managing incontinence in low-and middle income-countries: A qualitative case study from Pakistan

Background Incontinence is a complex health and social issue, which involves the involuntary loss of urine or faeces or both. Individuals with disabilities are particularly vulnerable to incontinence. The management of incontinence has largely been overlooked in low and middle-income settings (LMICs). This study aimed to explore the incontinence management strategies employed by disabled people with severe incontinence and their caregivers in Sindh Province, Pakistan. Methods Incontinence management was explored through in-depth interviews with people with incontinence (PWI) and their caregivers, photovoice, and a market survey and product attribute assessment. Data was analysed thematically through inductive coding and evaluated against existing disability and caregiver frameworks. Results Incontinence management affected all aspects of daily life for PWI and caregivers. Effective management of incontinence was prioritised because caregivers viewed it to be part of their familial duty and a requirement for the household to remain pure in the eyes of God. Coping strategies included strict adherence to routines, reducing food and drink intake, creative uses of locally available natural resources, and a heavy reliance on soap and water for maintaining hygiene. Products such as adult diapers were largely unavailable, costly and were not deemed suitable for regular use. There were no social or medical interventions in the region to support incontinence management. The main impacts of incontinence on the household were social isolation, stigma, role shifts within the family, the development of physical ailments among caregivers, and decreased income. Conclusion The complex health, psychological, social, economic, and cultural impacts of incontinence are exacerbated in LMICs due a lack of recognition of the condition, the absence of social or medical interventions and limited access to basic WASH infrastructure, and assistive devices or products. Appropriate solutions need to be developed in partnership with PWI and caregivers and need to be contextualised, affordable and sustainable.


examples.
This statement is required for submission and will appear in the published article if the submission is accepted. Please make sure it is accurate.
Unfunded studies Enter: The author(s) received no specific funding for this work.  This study aimed to explore the incontinence management strategies employed by disabled people with 30 severe incontinence and their caregivers in Sindh Province, Pakistan. 31 Methods: Incontinence management was explored through in-depth interviews with people with 32 incontinence (PWI) and their caregivers, photovoice, and a market survey and product attribute 33 assessment. Data was analysed thematically through inductive coding and evaluated against existing 34 disability and caregiver frameworks. 35 Results: Incontinence management affected all aspects of daily life for PWI and caregivers. Effective 36 management of incontinence was prioritised because caregivers viewed it to be part of their familial 37 duty and a requirement for the household to remain pure in the eyes of God. Coping strategies included 38 strict adherence to routines, reducing food and drink intake, creative uses of locally available natural 39 resources, and a heavy reliance on soap and water for maintaining hygiene. Products such as adult 40 diapers were largely unavailable, costly and were not deemed suitable for regular use. There were no 41 social or medical interventions in the region to support incontinence management. The main impacts of 42 incontinence on the household were social isolation, stigma, role shifts within the family, the 43 development of physical ailments among caregivers, and decreased income. 44 Conclusion: The complex health, psychological, social, economic, and cultural impacts of incontinence 45 are exacerbated in LMICs due a lack of recognition of the condition, the absence of social or medical 46 interventions and limited access to basic WASH infrastructure, and assistive devices or products. 47 Appropriate solutions need to be developed in partnership with PWI and caregivers and need to be 48 contextualised, affordable and sustainable. The shame and public stigma of incontinence affects people's treatment seeking behaviour (9-13) with 64 most not seeking treatment because of embarrassment or low expectations of treatment outcomes. 65 Incontinence can impact a person's ability to fully participate in society, for example in the workplace it 66 can reduce working hours and have negative impacts on concentration and performance of physical 67 activities (5) 68 Research from high income countries has shown that incontinence management places significant 69 economic burdens on both the patient and the health system (6). In 2000, the total cost of managing 70 incontinence in the US was estimated to be USD19.5 billion (14). 71 In high income countries, a wide variety of products and support services are available to manage 72 incontinence. These products are available in pharmacies and supermarkets or even online. These 73 include but are not limited to disposable diapers or inserts, reusable pull up pants, disposable catheters 74 and disposable mattress protectors (6). In high income settings water and soap are typically readily 75 available -both of which are key in effectively managing incontinence. 76 While little is known about how incontinence is managed in low-and middle-income countries (LMICs), a 77 recent study in Vanuatu highlighted a range of barriers including lack of incontinence products or 78 assistive devices, social stigma towards the condition and isolation of people with incontinence (15). 79 4 This study was designed to understand the coping mechanisms employed by older people or people 80 with disabilities and their families to manage incontinence in a LMIC setting. The study also explored the 81 relative importance incontinence management in comparison to other issues of daily life for older 82 people or people with disabilities. 83

84
Study site 85 This study was conducted in Sindh Province in Pakistan in July 2017, during the rainy season. According 86 to the 2004 World Health Survey, the prevalence of disability in Pakistan is approximately 13% (16). 87 Water, sanitation and hygiene (WASH) coverage varies substantially between urban and rural regions of 88 Pakistan. In urban areas, basic sanitation coverage is estimated to be 76%, while in rural it is 50%. 89 Similarly, in urban areas the majority of people (86%) have access to a basic handwashing facility with 90 soap and water but in rural areas 54% of the population lack this. Only 35% of Pakistan's population 91 have access to safely managed water (17). At the time of this study there was displacement due to 92 flooding in several regions of Sindh. 93

94
The study employed a range of participatory qualitative methods including in-depth interviews with 95 people with incontinence and their caregivers, photovoice, a market survey of incontinence products, 96 and field note taking. All these methods are described in detail in Table 1

In-depth Interviews:
We developed an open-ended question guide that focused on the management of incontinence. These included questions on incontinence management, coping mechanisms (individual and of their carers), barriers, product use and access to water, sanitation and hygiene (WASH).
10 people with incontinence and their caregivers (5 of these participant-carer pairs lived in urban settings and 5 in rural settings). In each pair the person with incontinence was interviewed separately to the carer so that they both were able to speak freely about their experiences.
Photovoice: This aimed to understand the impact of incontinence within the larger context of issues faced by people with disabilities. Respondents were given a camera 4 people with disabilities (2 urban and 2 rural) 5 and asked to take total of 10 pictures, 5 representing the best part of their day and 5 representing the challenges they face in managing their incontinence. This was followed by asking the participants to rank the pictures from most important to least important. This followed a protocol piloted in previous work with people with disabilities (18) Examination of physical artefacts: A market survey was conducted to understand the availability of products used for incontinence management. We approached a range of local shops including local pharmacies, general stores and local thelas (pushcart vendors) and asked them whether they stocked products for incontinence management. During in-depth interviews, families were asked to bring out all items they were using in the management of incontinence. They were asked a series of questions about each item including how long it has been used for and it's positive and negative attributes. Products purchased in the local market were introduced and a discussion took place on their opinion regarding the products and their perceived cost and utility.
Conducted with the same 10 participant pairs that took part in in-depth interviews.
Field Notes: The lead researcher (ZA) took extensive field notes during her research. The notes were used to capture key observations about behaviors and coping mechanisms that did not come across in the other methods.
Notes written at the end of each day of data collection.

101
Any person with either faecal and/or urinary incontinence was eligible to be included in the study as a 102 primary participant. Hereafter primary participants are referred to as participants with incontinence 103 (PWI). PWI were excluded if their incontinence could be repaired through medical intervention such as 104 women with fistulas or men with prostate issues. 105 Caregivers of primary participants were also included as 'Secondary participants' if they were actively 106 involved in assisting to manage the PWI incontinence. 107 108 In the first phase of sampling, a local disability person's organization (DPO), health workers, women's 109 groups and village leaders were provided with a definition of incontinence and asked to list any 110 6 households where they knew of someone that had this challenge. Due to lack of awareness about 111 incontinence, this strategy was amended to also list individuals with cognitive and physical impairments. 112 Families with a person meeting this revised criterion were then visited to see if they were eligible. 113 People with more severe incontinence were intentionally selected to participate, however participants 114 were also purposively sampled from the list to reflect a variation in age, urban-rural location, 115 socioeconomic status and impairment type. 116 A particularly detailed process of informed consent was done with photo voice participants. This 130 involved PWI being able to select how their images could be used and shared and whether they wished 131 their name or a pseudonym to be used. 132

Characteristics of Sample
134 Table 2 describes the characteristics of the participants and caregivers included in this study. All of the 135 PWI had a physical or cognitive impairment, with majority being male as we could not identify any other 136 primary female participants. All participants were considered to have severe incontinence, and were 137 7 either unable to use a toilet independently or were reliant on assistive products (e.g. diapers). Of the 10 138 caregivers, nine were women and all were family members, the majority being wives or mothers of the 139 disabled person. Seven other elderly PWI (without visible physical/cognitive disability) were asked to be 140 part of the study, but all refused to participate. All of these individuals stated that they did not have 141 incontinence, even after their caregivers confirmed otherwise. Photovoice was conducted with four 142 additional participants, all with a physical disability. 143 144

Cognitive/Intellectual Impairments
Intellectual Impairment 3 § Some participants had more than one impairment

Prioritization of incontinence management within daily life
147 PWI and caregivers reported that incontinence management was always a priority in their day to day 148 lives. Three themes emerged through interviews and photovoice to explain this prioritization: the 149 importance of routine, the carer's sense of responsibility and the need to be clean in the eyes of God. 150 "Roz mara ka mamol" -Routine:

151
PWI and caregivers emphasized that incontinence management affects many aspects of their daily 152 routines. Following a structured daily routine made managing incontinence easier for both carers and 153 PWI. During a typical day caregivers explained that they would normally get up before the PWI so that 154 they could address their own needs. Once the PWI was awake the carers day was dominated by tasks 155 related to incontinence management. This included bathing the PWI, cleaning their clothes, and washing 156 sheets or bedding from the night before. Over the years, most careers had noticed patterns in the timing 157 of the bowel and urinary movements of the PWI and adjusted routines to align with this: 158 "She usually has to go around 11 and has a schedule. She will then have to go again 159 around 1 30 and will tell me to quickly come home from work to take her because she 160 can't control it otherwise" -Caregiver of a PWI, urban area. 161 Accordingly, most caregivers were also responsible for providing food and drink to the PWI at certain 162 times of the day so that incontinence management could be more easily predicted. Most caregivers 163 were able to describe their daily routine schedules in detail. This level of structure was also described as 164 necessary because activities such as bathing often required the involvement of more than one person. 165 "Ye meri zimidari hai" -It is my responsibility 166 Within the Pakistani context, providing care to family members was recognized to be part of cultural and 167 religious norms. All caregivers framed their incontinence management work within the discourse of 168 familial duty and responsibility. Specifically, caregivers believed it was their responsibility to preserve 169 9 the dignity of the PWI they were taking care of. Effective management of incontinence was key to 170 maintaining that dignity, as sitting in urine or faeces was considered humiliating. Even if the task caused 171 embarrassment for the caregiver, their sense of responsibility trumped those feelings: 172

"Sometimes I feel ashamed /embarrassed but after all he is part of my family and it 173
is my responsibility to take care of him." -Caregiver of a PWI, rural area. 174 Even though familial duty drove caregiving behaviour, incontinence management was not always done 175 willingly. One caregiver said she was praised for taking care of her mother-in-law by others in the 176 community, but it was a responsibility she did not want and hoped that her mother-in-law would soon 177 pass away, so that this responsibility would be lifted from her. 178

179
The interaction between incontinence and faith was another reason management incontinence 180 management was prioritized. Religion was seen as a way of making sense of incontinence and disability. 181 Islam is dominant religion in Pakistan and governs many aspects of behaviour and daily life. Most PWI 182 mentioned that Allah gave them this condition and felt that they owed it to God to remain clean: 183

"We have to have faith in God. Otherwise, what can we do? Whatever God does, that is 184
what will happen. We can't change that. We can be clean to pray to him." -PWI, urban 185 setting 186 The two Hindu families included in this study also felt that they needed to remain clean in order to 187 practice their religion and emphasized that it was therefore essential to prioritize cleaning and 188 incontinence management over other aspects of their daily life. 189 Caregivers were concerned that any lapse in 'watching over' the participant could result in additional 211 work (e.g. the need for additional bathing), negative health consequences (e.g. damage to skin as a 212 result of being stationary and sitting in urinary or faecal matter) and lead to the PWI experiencing 213 feelings of guilt or embarrassment because they were not able to manage their incontinence 214

Social, health and economic impact of incontinence
independently. As such the social impact, isolation and stigma associated with incontinence permeated 215 beyond the PWI to affect the caregiver. 216 "Zimidari badalna"-Role change 217 Many participants reported that with the onset of incontinence, they experienced a shift in gender-218 related roles and responsibilities, and that power dynamics within familial relationships changed. 219 Pakistani culture is a patriarchal system which places most social liberties and decision-making in the 220 Reducing food and drink intake emerged as one of the most coping mechanisms to manage 236 incontinence in this setting. This had obvious negative health consequences. For example, it was 237 observed that the majority of PWI were thin and carers explained that they did not want to eat. In 238 Interviews and through photovoice PWI explained that limiting food and drink intake was a way for 239 them to prevent embarrassment and reduce the burden on their caregivers, as highlighted by a male 240 photovoice participant in Figure 2. However, choices about consumption did vary across PWI. Two participants said they increased their 244 water intake to 'balance out' their choice to eat very little, explaining that this was necessary prevent 245 dehydration during the hottest months of the year (temperatures sometimes got up to 52°C during the 246 field work). 247 Caregivers frequently reported that they had developed physical ailments because of their caregiving 249 role. The most reported ailment was back and shoulder pains, associated with the regular need to lift 250 and move PWI to bathe and clean them. One male photovoice participant chose to depict the effects 251 caregiving had on his aging mother (Figure 3). 252 253 254 Caregivers of PWI with cognitive impairments, reported frequent physical ailments and injuries. 255 Maintenance of incontinence was even more difficult because, as one care giver explained, they "can't 256 carry him like a normal child". Caregivers for PWI with cognitive impairments also mentioned being 257 injured by impulsive behaviour, primarily when trying to clean the PWI. Sleep deprivation and fatigue 258 were common among caregivers. One of the male PWI's mentioned how his caregivers do not seek 259 healthcare for their health concerns: 260 "Their body begins to hurt, and I do not know how to make it not hurt. I tell them to go 261 to the doctor, but they refuse. I think that I am light, but you don't realize that the body 262 is very heavy and it will have an impact on the people that take care of you."-PWI, 263 urban setting. 264 265 Most PWI had not visited a doctor and those who had did so because of their disability and did not ask 266 about their incontinence, due to embarrassment about the condition. One participant that did speak to 267 the doctor about incontinence, was not given any advice on effectively managing it, being told to simply 268 "learn to live with it". Another participant who had spoken to a doctor about his incontinence was 269 provided with a catheter, but he was not told how to use this or any of the health issues that may be 270 associated with its use. PWI explained that they didn't know how to raise the issue of incontinence with 271 health professionals as there is no word for incontinence in the Urdu language.  Table 3 provides a summary of the products available identified through the market survey and their 283 costs. The most commonly available item for managing incontinence was adult diapers, with one brand 284 of diapers being more common as it was made locally. All brands of diapers cost over GBP 5 for a pack of 285 10 diapers. Most items were available only in urban areas. Disposable pads or inserts, disposable 286 mattress protectors and reusable pull up pants were not available in urban or rural areas. 287 Shop owners and pharmacists who were asked about products for managing incontinence were often 289 confused by the question. After describing the condition, some knew of adult diapers, but information 290 on products was limited. One pharmacist handed the researcher a box of condoms thinking that this 291 may help with the condition. Others seemed uncomfortable with the request and declined to provide 292 suggestions of relevant products. 293 "Pampers se sub kaam nahi chalta" -Diapers are not the complete solution 294 When the products identified through the market survey were shown PWI and caregivers, most 295 mentioned having seen diapers before, even in the rural areas of Sindh. However, when asked about the 296 products they had available for incontinence management none of the five rural households and only 297 two of the five urban households had diapers available and all reported that their use was minimal. 298 Participants explained that diapers could temporarily reduce stress related to incontinence: 299 "They are okay. I wouldn't have to worry for a little while…. I wouldn't have to be 300 worried about consistently dirtying my clothes then." -PWI, Urban setting. 301 The problems associated with diapers were seen to outweigh the benefits. All families mentioned that 302 the materials used in diapers meant that they were uncomfortable to use in hot weather with PWI being 303 likely to get heat rashes and blisters from wearing the diapers. The cost of diapers also deterred participants from using the product: 310 "Each diaper was for Rs 100. If I had to urinate 5 times a day, I will need Rs 500 every 311 day. I didn't ask for it again." PWI, rural setting. 312 The possibility of creating diapers at home seemed more appealing to participants. Cloth diapers were 313 seen as more comfortable and cheaper alternative for the participants. 314

315
Soap and water were repeatedly identified by PWI and caregivers as the most important products for 316 managing incontinence and managing associated smells. The majority of the PWI took three to four 317 showers a day to maintain their hygiene and minimize smell, with caregivers estimating that they often 318 had to collect four or five times as much water to support their needs as compared to neighbouring 319 households. PWI who had ample water available reported being happier as their laundry and bathing 320 needs could be met in a timely and convenient manner. In rural areas, physical barriers, such as the 321 distance to water points, were cited as most problematic by some caregivers: 322 "It takes a lot of effort to collect water. I have to go collect it almost three times a day 323

and I can never carry enough for my brother's baths. He never feels clean enough and 324
then sits and cries about his smell." -Caregiver of a PWI, urban setting. 325 In urban areas, some caregivers spoke about the costs of procuring enough water, indicating that this 326 became a substantial part of their household income. All PWI and caregivers explained that soap was 327 key for smell management and general cleanliness. This was captured by one participant in the 328 photovoice activity (see Figure 4). The majority of PWI and caregivers reported always having access to soap at home. While frequent soap 335 purchasing was recognized as a significant expense, it was worth the cost and some families took loans 336 from local stores to be able to have soap available. Scented soap was considered preferably by PWI and 337 caregivers but was often more expensive. 338 "Humari zamin ka samaan" -Use of local products for incontinence 339 management 340 Rural participants described the use of straw and grass as a tool for waste management: 341 "We have it lying under the bed. When he urinates or defecates, the liquid and some 342 material seeps down into the grass. It is easy to clean as we then use a rake and 343 push it to the side into this pile. The pile is then used to fertilize our crops." -PWI, 344 rural setting. 345 Rural participants reported using sand as an alternative to soap to clean a PWI hands and body prior to 346 being rinsed with water. Sand or clay were also used to cover the fecal matter so that it dried out and 347 became easier to dispose of. These methods were seen as cost-effective solutions to incontinence 348 management in rural settings. However, caregivers did emphasize that they were only used when they 349 could no longer afford to purchase soap and that sand did not cover up the smell on the participants. 350

351
Our research is the first to explore the lived experiences of people with severe incontinence and their 352 caregivers in a LMIC setting. The emergent themes of this study highlight the need for a holistic 353 approach to the management of incontinence in these settings. Across rural and urban areas of Sindh 354 Province, incontinence was a condition that was largely undiagnosed and rarely discussed. The 355 management of severe incontinence was found to affect all aspects of the daily lives of PWI and their 356 caregivers. In a LMIC setting such as Pakistan, incontinence management created economic hardships 357 for affected households, health challenges, social isolation from the wider community and had negative 358 effects on the dignity, self-esteem and identity of those affected. 359 Our findings are consistent with research documenting experiences of incontinence in high income 374 settings (23-25). However, challenges related to managing incontinence appear to be exacerbated in 375 LMICs due to factors in the socio-economic and physical environment. For example, in many high-376 income county settings there are professional care services, assistive products and devices, social 377 protection schemes, health systems and formal or community-based support programmes which can 378 help mitigate the costs and physical and mental toll of caring for a person with severe incontinence 379 (23,26-29). While access and use of these services may still vary in high income settings, none of these 380 support mechanisms were available to PWI or caregivers in our study. As such the financial costs and full 381